MEGAN JONES, Columnist

Monday, December 30, 2013

I was hospitalized in December and before I left for the hospital I did as I always do. I removed all of my jewelry. I took off the Celtic cross I’ve worn around my neck since the day my sister gave it to me years ago. I removed my earrings and took off my Medic Alert bracelet. The only pieces of jewelry that remained were my “BELIEVE” band and my Operation Ward 57 band. They are silicone so I knew I could go into the OR with them on.

My anesthesiologist was one I know very well. She’d taken notice of my two yellow bands and as I moved from my bed to the OR table, she asked me why I hadn’t taken them off. After all, I could always put them back on in a few hours when I returned to my hospital room as I do with my watch every time. I could see the curiosity in her eyes and noticed that I’d drawn the attention and curiosity of my surgeon’s chief resident as well so I went ahead and explained the stories behind my two yellow bands.

Thursday, October 10, 2013

Multiple Sclerosis is a chronic, progressive and debilitating disease of the central nervous system (the brain, optic nerves and spinal cord). While it is clear that the immune system is involved, it is not clear whether MS is or is not an autoimmune disease which is why it is often referred to as an immune-mediated disease. One thing that is certain is that in people with MS, the body attacks itself. Myelin is the fatty substance surrounding the nerves in the body and it is it's own myelin, as well as the nerves it is meant to protect, that the body attacks. Scar tissue forms in the areas where the myelin has been destroyed which is how the disease gets its name. Multiple Sclerosis - Multiple Scars. Due to these scars or lesions, messages sent throughout the body from the brain, optic nerves and spinal cord get disrupted which resuts in the myriad of possible symptoms associated with the disease. An important thing to remember about Multiple Sclerosis is that no two cases are the same.

How old were you when you were diagnosed with Multiple Sclerosis?My diagnosis of MS came in 2003 when I was 19 years old.

When did you first notice symptoms?Looking back through my medical history my primary care physician as well as the top notch neurologist I see are 99% certain that I was around 9 years old. However, at that time and still largely today, Multiple Sclerosis was thought to be a disease that only adults get. Slowly pediatric MS clinics are opening and doctors are realizing that it does strike children.

What was your reaction to the diagnosis?I seem to be one of the few people who was relieved and grateful at the time of my diagnosis. As stated earlier, I'd been struggling with odd symptoms that would come and go since I was a child. Neither my primary care physician, Children's Hospital of Pittsburgh, physical therapists or the handful of others doctors I saw over the years thought to look outside of the box. Instead my parents and I were repeatedly told that I was making things up and simply seeking attention. That prompted me to start hiding my symptoms as best I could which in turn made me a very angry teenager. When I finally found the neurologist who would later diagnose me he told me that he was certain that it was one of three things : a brain tumor, ALS (Lou Gehrig's Disease) or MS. Of those three things I'll take the MS. When I recieved the diagnosis of MS I was relieved and felt vindicated. I now had proof that I hadn't been making things up or looking for attention.

What symptoms have you experienced?Hand tremors. Nerve pain. Spasticity (a feeling of tightness - stiff and rigid muscles). Headaches. Optic Neuritis (reduced or complete loss of vision in one or both eyes). Ocular migraines (extremely painful eyes). Severe fatigue (to the point where I was literally awake for only 4 hours a day). Double vision. Blurred vision. Drop foot (the ankle is more or less paralyzed and drags on the ground). Balance issues. Problems with coordination. Problems with my thought process (commonly referred to as "cog-fog") Heat sensitivity. Color blindness (if you give me a folder and ask me what color it is, the color I will most likely see and respond with is light brown even though the folder is actually yellow)

What would you say has been the scariest situation you've found yourself in with MS?To date I have had 46 surgeries on my right leg. Multiple Sclerosis and anasthesia are not on the friendliest of terms. Twice the stress on my body combined with the anesthesia have caused the nerves in my chest to short circuit causing difficulty breathing. By far those two moments have been the scariest part of my journey with MS.

What symptom(s) finally got you diagnosed?I awoke in my dorm one morning, hopped out of bed and landed flat on the floor because my right leg from about the knee down was paralyzed. When the feeling returned to my leg it was some of the sharpest and hottest pain I've ever experienced and nothing seemed to touch it. Without warning the pain would cease and my leg would be numb and paralyzed again. It fluxuated between pain and paralysis. That is when I saw a neurologist who prescribed medication to ease the nerve pain when it was flaring up. He later diagnosed me with MS.

What tests did they order that led to your diagnosis?I had MRIs of my brain and spinal cord. I had a lumbar puncture or spinal tap (something I will NEVER allow anyone to do again due to the fact that I'm one of the lucky tiny percentage of people where the hole created in the spinal cord by the needle refuses to heal on its own resulting in some of the absolute worst headaches imaginable. I ended up needing a blood patch where they draw blood from your arm and then inject it into the area where they'd done the spinal tap). Evoked Potential Testing (electrodes are attached to the scalp and you are presented with various stimuli and the electrodes measure the amount of time it takes for various nerves to respond).

What drug(s) do you take to slow the progression of the disease?None. I'm allergic to the C.R.A.B. (Copaxone. Rebif. Avonex. Betaseron) injectable medications. When I was first diagnosed I did start out on Copaxone and tolerated it very well for awhile. 5 years later I had an anaphalactic reaction to it for unknown reasons. I can't take the newest IV infusion medication because it lowers a person's white blood cell count opening them up to infections. It also carries the very small risk of a certain brain infection. Due to the infection history with my leg the risk simply is not worth it. All I take now are various medications that treat specific symptoms.

Do others in your family have MS?As far as we know, no one besides me has MS.

What is something you want people to understand about MS?First of all, it's not contagious - I can't give it to you. Secondly, the diagnosis of Multiple Sclerosis changes things but it's not the end of the world. There are far worse diseases striking people down every day. The only way MS can beat you is if you allow it to.

The past ten days have been long, stressful, scary, unnerving and a whole host of other things all of which I am trying to work through but know all too well that it will take a lot of time and patience. As most people are aware my go-to form of processing various things is writing. It is the written word that helps process everything happening in the world around me. On Wednesday May 1st I returned to my old hospital stomping grounds for what was pretty much an elective and simple surgery. I still had wounds in my nub from the surgeries in December and within one of them was a very raw very exposed nerve causing a lot of pain because the tunnel it was in was so narrow. The decision was made to open that section of my nub up again making it far wider, easier to pack, and less painful. It was to be a 23hr stay.

These days a patient is one of three things following surgery: inpatient, outpatient, or on a 23hr hold. This is all to appease the insurance company gods. If a patient is registered on a 23hr hold it means that if something unexpected happens or if there’s a little more pain the hospital can set you up in a room for the night and as long as your discharge papers are dated to read that you were only a patient at the hospital for 23 instead of 24hrs the charge is the same as it is for outpatient surgery. If you go over that 23rd hour it becomes an inpatient charge which is far higher. To be better safe than sorry my surgeon opted to put me down under the 23hr rule.

The surgery itself went great. They widened one of the tunnels that had formed and had been giving me all kinds of grief with horrible pain from an exposed nerve. It also cut down the risk of further abscesses forming there. It was all going wonderfully until post-op where it was noticed that I wasn’t breathing quite right and they had to keep me intubated for a longer period of time. I wasn’t tubed for any huge length of time but no matter how long or short an intubation period lasts it’s a concern. What happened is something that has happened twice before. My Multiple Sclerosis was kicked into hyper drive. I lost 90% of the vision in my right eye, developed a really bad tremor in my right hand, felt weak and couldn’t breathe. There is a lesion in my spinal chord in just the right spot that when it activates even for just a second the nerves in my upper chest short circuit and stop working which constricts my lungs and heart. As I said, it’s happened twice before and both times it took 2-3 hours and a bag of steroids to calm things down and return everything to normal. This time was very different. I was on oxygen for 48hrs straight as well as given several rounds of IV steroids over several days and nebulizer-breathing treatment, which is, inhaled steroids.

I can safely say that I scared the crap out of every single person involved with my case, especially those who have known me for years. Everyone knows I have MS on top of the infection issues and everyone has seen a symptom here and there like a slight hand tremor. No one had ever seen me truly disabled by this monster. Needless to say I was immediately admitted to the hospital for as long as I needed to be there. I also had the misfortune of getting up out of bed and falling. Not only did I fall but I went down hard and landed squarely on the area of my nub that had just been freshly operated on. Thankfully other than some bleeding and pain no damage was done.

Now I am a truly independent person who will find all kinds of inventive ways of retaining my independence. When you fall in a hospital setting they immediately take what little independence you have away from you. My crutches were taken, my wheelchair was moved out of my reach and any time I needed or wanted to get up and out of bed even just to stretch I had to hit the nurse call button and wait for someone to come and help me. The final night in the hospital I sat up and leaned to the side slightly to grab my thing of ice water and both felt and heard a pop from inside my nub. Shortly thereafter I noticed that I was bleeding. I had some gauze packed inside and 3 ace wrapsholding everything together. Some people may remember that back in 2009 while at home on my couch I suffered an arterial hemorrhage from my nub which would have killed me had I been asleep when it happened. So needless to say, when the pop happened this time and I saw all of the blood I had myself a bit of a panic attack. Thankfully the resident on call that evening was one I’ve known for several years and get along with pretty well so she immediately understood why I was panicking and reassured me that it was not an artery. The following morning I was finally discharged.

While this surgery and subsequent hospitalization was truly hell on earth there is one absolutely incredible thing that came from it. I’ve always known it but this entire experience from the start in 2004 through now has shed so much light on the fact that I am surrounded by some pretty incredible people who care about me and love me unconditionally. I’ve always said that I have the most incredible support system of family, friends, neighbors and medical professionals and I’ve always whole-heartedly meant it. We all have people in our lives that say that all we have to do is say the word and they’ll be there in a heartbeat but how many of us actually do have those people in our lives? How many of us have friends who will give up whatever plans they had for a day to come and sit at our hospital bedside and sit through appointments with doctors with us because they know we need them that badly? How many will read our words about the way hospitals butcher cake and show up later with cupcakes just to make us smile and feel a little better? How many nurses will sit with you until you understand that the events in your life at the moment are crazy but that you, yourself, are not? How many will use their kid's crayons to draw you a picture to make you smile and make you see that they care? How many people will send carepackages from home to a friend we haven’t actually seen or talked to in 10 years aside from via Facebook? How many of us have people will stay up all hours with us while we cry? I may not know a lot of things and I may not have the best of luck in a lot of areas in my life but one thing I do know is how incredibly blessed I am to have some of the most incredible people in the world around me to help support me when I need them the most.

As an amputee, I'm very used to random people coming up to me when I'm out and about with questions about my missing leg. It's human nature to be curious about such things and most of the time I'm willing to stop and answer the questions. It either has to be a bad day or the person has to creep me out for me not to so when a woman came up to me in the store today I assumed that she had questions about my leg. Instead, she wanted to know if I'm a Belieber.

WOMAN: Are you a Belieber?Me: God, No!WOMAN: Oh, well my kids love him and look up to him.Me: Justin Bieber is a giant festering boil on the butt of society. If your kids are looking for people to look up to I'll gladly give you the names of some wounded warriors that they can Google and learn about or the names of some of those who gave their lives for us.

I thought that she would turn and walk away mumbling about my being incredibly rude as a man in the same aisle did after overhearing the conversation. She looked at me for a minute and the surprised me by taking out a pen and notepad and asked for some of those names. I gave her several names and watched her write each one down asking if she was spelling them correctly.

We stood there in that aisle, me naming wounded warriors and some of those who gave their lives, her carefully writing then down. When we were done she gave me a hug and thanked me for reminding her who the true heroes and role models are. She said that her children would be learning about those I'd named and that there would be a family field trip to Arlington National Cemetery in their futures. I told her to visit Section 60 where those who made the ultimate sacrifice in Iraq and Afghanistan are at peace in their final resting place.

I’ve had some bad hands dealt to me in the game of life and I am in no way ashamed to admit that I am one of the millions of people who battle Post Traumatic Stress Disorder. In 2009 after a huge surgery and one week in the hospital I was sent home to do open wound care treatment which meant a nurse came to the house each day to take the previous day’s gauze out of the wound and pack new gauze into it. One night after the nurse had been to the house, I was lying on the couch and reached down to scratch an itch at the end of my nub. My hand came back covered in blood. One of the arteries in my leg had suffered a massive hemorrhage and I was bleeding out. I remember being asked by the EMTs if I was usually so pale and them telling me they were going to do a “grab and go” with lights and sirens all the way. I remember arriving at the local hospital and my surgeon being on the phone with the ER doctor trying to figure out if I was stable enough to be transferred. I remember the ride to Baltimore in the second ambulance and I remember the rush into the OR where I was given several units of blood and where my heart stopped briefly. While there are other events that caused me to develop PTSD, that night, the night of the bleed, is the one that haunts me the most.

I go to PTSD therapy once a week with a therapist that I’ve known from day one is a pretty great guy but he really proved it last week. I’d just left his office and was maybe 5 minutes down the road when the car in the lane beside me decided to slam it’s brakes while making a very sharp right turn crossing directly in front of me. What he needed at The Home Depot so badly, I really wish I knew. I managed to hit my brakes and swerve just enough not to hit him but the car behind me didn’t have enough space or time. Her car slammed into the back of my car with enough force that the cast on my left hand actually broke. It also really wrenched my shoulder and as my hand/arm doctor would tell me the next day, the very thing making treating my pinky so hard and the very thing that caused me to need my thumb fused (Joint Hyper Mobility Syndrome) is the reason why I didn’t tear ligaments and tendons. Anyone with normal joints would have had serious damage done to them.

The first cop that arrived told me that he was glad to see that I was calm, cool and collected but as the first of the ambulances appeared on scene I stared into his eyes and said, “Calm, cool and collected is about to go right out the window” and it did. The sight and sound of the ambulances was enough to trigger my PTSD but then to be strapped to a gurney and put inside the ambulance sent me right over the edge and into complete flashback mode. In an instant I was back in 2009 with blood oozing through a full roll of Curlex gauze, 3 ace wraps, 3 abdominal pads and a shrinker sock. In an instant I was once again bleeding to death. My first phone call, when my mind cleared just enough to allow rational thought in, wasn’t to my family. It was to my therapist. I knew that things were going to go from bad to worse and that very soon any ability to think rationally and stay in the present was going to be gone. The next thing I knew he was calling me from the waiting room of the ER telling me to send someone to get him since he isn’t family. Just the words “PTSD Therapist” are enough to get any doctor or nurse to hustle and he was by my side quickly. I only just learned today that he’d cancelled his last session that day claiming an emergency, called his wife to tell her he didn’t know when he’d be home, and spent the next 3 hours of his own personal time in the ER with me.

When I’m triggered I don’t do what the majority of people do. I don’t outwardly freak out other than my hands turning clammy and rocking slightly from side to side. I turn inward, clam up, and zone out. He was able to explain my process to the doctor and nurse and be my eyes and ears while they were talking then would get my attention by putting his face directly into my line of sight and calmly explain what they’d just said. He also explained the various triggers that set me off to them so they could make some accommodations such as not bringing anything into my room that makes a constant beeping sound unless absolutely necessary. He immediately noticed my reaction to the x-ray techs moving my gurney and knew it was triggering a flashback to the night of the bleed and the journey from the ER to the OR and was able to keep me in a place mentally where while I had one foot back in 2009, I still had one foot in the present as well (no pun intended). He was right outside the door when the x-rays were finished and saw what no one else did. He looked at me, looked behind me into the x-ray room, then looked back at me and said,“X-rays beep.” I nodded and he simply took my hand as we headed back down the hall to the room. Even after my father finally was able to get through beltway traffic and get to the ER, my therapist stayed. As he told me today, he absolutely hated to see me in that state but it also gave him a very good glimpse into my PTSD process since it’s a process that is different for every sufferer.

Due to events in my past I carry a massive amount of distrust towards anyone in the medical field, which is ironic seeing as I am surrounded by them and constantly headed to one doctor or another. The fact that my first phone call last week was to my therapist and that he was the one person I really wanted in that moment both surprised him and made him feel honored to be included in the very small circle of medical professionals that I trust. He is very well aware that my typical reaction to things is simply to tough it out, act like I’m fine and then fall apart on my own later. I suppose you could call last week progress in it’s own odd way!

The thing about PTSD is that it's not just a battle for survival and it's not just about the event. PTSD is a battle for self.

Tuesday, September 24, 2013

As most friends and followers are aware I have been in the fight of my life against lie-threatening infections. I've now undergone 47 surgeries including the chosen amputation of my right leg above the knee. In September I underwent surgery for infection in my nub.

All things considered, the surgery was one of the simplest and faster surgeries I've undergone I'm the past 9 years. The only surgeries that beat this one were the two times various limb fixators were removed from my leg. However, what made this one so different has to do with the events that took place at the end off last year.

The way things have been going since I got home from the hospital is that the home nurse pulls the gauze out then uses a cotton tipped applicator and sticks it inside the tunnel that branches out from the main wound. They push it in, as far it is goes, pull it back out, and measure from the tip to the spot where the wooden part of the applicator isn’t bloody. That is what I expected to happen today but instead the doctor asked for a piece of equipment which happened to be a very large metal rod that was shaped like a cone getting larger at the end. She then proceeded to push that into the tunnel causing me to stop breathing and tense up from pain. It hurt but from it we learned that the tunnel, which had started out at about 7cms, was now slightly over 8cms obviously meaning it had grown instead of shrunk. It also means infection.

It’s not surprising that there’s a slight infection. It’s a giant open wound and the world is not a sterile environment. It’s not something to worry about at this point as this is normal and the various things they have planned will kill off and remove the bacteria that’s gotten into the wound. I don’t even need to be on antibiotics.

The doctor’s next suggestion was to do wound dressing changes, packing and repacking the wound, twice a day. She immediately had my attention and at first I tried to be good and calm explaining that I realize it’s a PTSD issue on my part but the last time we did twice a day changes like that I had an arterial hemorrhage and nearly died right on my own couch. She started telling me that my wound looks great so something like that wouldn’t happen and I interrupted saying that the last time around in 2009 my wound supposedly looked great and was perfect and no one thought there’d be any problems and then there was a HUGE problem. I reiterated that I'm aware that it's a PTSD issue for me but a very real issue just the same. As it is my alarm clock HAS to go off as music. It can’t go off as a beep because the beep immediately sends me back to the night I nearly died from the hemorrhage and panic sets in. At that point I could no longer keep the tears from falling. The doctor left to get something and the nurse in the room who I’d only just met immediately came over to me and wrapped me up into a big hug and let me cry. She just kept telling me that it was OK that with all I’ve been through I’m allowed a meltdown from time to time and to never let anyone tell me different.

By the end, the doctor and I were on better terms though I still don't really like her at this particular point, and some minor changes to my current medical routine are being set into place and now we’re waiting to see if I’ll be spending time in the hyperbaric chamber again as I did in 2009 or not. The biggest question is for my neurologist because a person with optic neuritis runs the risk of going irreversibly blind in at least one eye doing hyperbaric therapy. I spent a short period of time this summer blind in my right eye due to optic neuritis thanks to my MS. The doctor said that and immediately I said, "I'm not going blind. Ain't gonna happen." I must have said it half a dozen times. We’ll see what my neurologist who is tops in his field has to say about it in my particular case.